5 Reasons to Attend Face to Face with Scleroderma

Whether you’ve been touched by scleroderma personally, know someone who has been affected by the condition or simply care about the cause, let’s come together on September 10 to face scleroderma head-on.

Face to Face with Scleroderma, our annual educational event, will be coming to the east side this year. This incredible event gives us a platform to support our threefold mission and puts us one step closer toward a cure. And thanks to a generous donor, the cost to attend is now only $20.

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7 reasons you should join the Michigan Chapter.

Empathy and information goes a long way when it comes to managing chronic disease. That goes double when you’re coping with a relatively rare condition like scleroderma. That’s why thousands of patients belong to the Scleroderma Foundation Michigan Chapter (SFMC).

We pride ourselves on being the go-to place for patients looking for news, networking, counsel and support. Leadership is connected with some of the top minds and trailblazers working in the field. Not yet a member? Here are 7 reasons to join now.

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6 ways to participate in Scleroderma Awareness Month.

School is out, the sun has dominated the clouds, a sense of happiness is in the air and Scleroderma Awareness Month has arrived.

Every year, the month of June is dedicated to raising awareness for the autoimmune disease that affects so many, yet is made knowledgeable to so few.

So… a whole month to spread the word about scleroderma? Let’s get started.

Need some inspiration? We’ve got you covered.

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Check out these four books about scleroderma.

“Books are the quietest and most constant of friends; they are the most accessible and wisest of counselors, and the most patient of teachers.” ―Charles William Eliot

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Read anything good lately? We have a few suggestions.

They may be not important literature or breezy beach reads, but they are important reads. They focus on a mysterious disease that is the common denominator in our community, but largely uncommon to most every other community. They are all about scleroderma.

We found these books while perusing a couple good online sources: Amazon and Goodreads.  Check them out.

1. If You Have to Wear an Ugly Dress, Learn to Accessorize: Guidance, Inspiration, and Hope for Women with Lupus, Scleroderma, and Other Autoimmune Illnesses.

Published in 2011, this book by Linda McNamara and Karen Kemper encourages readers to slow down and reexamine their values in the face of chronic illness. McNamara is a registered nurse and healthcare consultant who was diagnosed with systemic lupus in 1996. Kemper, a health educator and university professor, has been living with scleroderma since 1992.

“This book is a warm blanket on a chilly day,” said Goodreads member Leslie, in a May 2012 review. “I recommend it to anyone experiencing and/or seeking to understand the emotional side of chronic illness. I anticipate rereading this book.”

2. The Scleroderma Book: A Guide for Patients and Families.

This is one of at least three books Maureen D. Mayes, M.D., has written about scleroderma. The Scleroderma Book is considered a leading source of information for patients. The Second Edition was published in 2005. Writing for patients and their families, Dr. Mayes draws on her extensive experience treating scleroderma to provide practical information to help patients manage their symptoms and improve their quality of life.

Goodreads contributor Marilyn posted this review of The Scleroderma Book in December, 2014.

“This book was extremely helpful with information about the genetics, symptoms, and complications of scleroderma. I especially appreciated the chapter about the emotional impact of the diagnosis; the chapter is called ‘Living an Unpredictable Life Facing an Uncertain Future.’  Yep. That is exactly what it feels like. How wonderful to read advice that is frank and helpful as I have discovered that my friends and family are having more trouble coping with the diagnosis then I am.”

3. A Patient-Expert Walks You Through Everything You Need to Learn and Do.

When author Karen Gottesman was first diagnosed with scleroderma, she immediately began educating herself on every aspect of her condition. Her research and self-discovery lead her to write this book, a guide for the newly diagnosed to manage their first year with scleroderma. The book includes information about the disease, treatment options, diet, exercise, social concerns, emotional issues, networking with others, and much more. It was published in 2004.

Goodreads contributor Sophie rated the book five stars, calling it “extraordinarily helpful.” “One of the first books I read after I was diagnosed.”

4. Scleroderma: From Pathogenesis to Comprehensive Management. 

Published in 2014, this resource promises the most up-to-date information on scleroderma. A clear and concise synthesis of current concepts in pathogenesis and modern approaches to management, this book is comprised of the authoritative work of international experts. It is written, however, for the medical community and may prove too much for patients to tackle. You may want to ask your medical team—whether rheumatologists, pulmonologists, cardiologists, gastroenterologists, nephrologists or anyone involved in your care—if this is on their shelves.

These books have something unique to offer readers. But there is so much more that needs to be written about scleroderma and those who battle it every day.

“If there’s a book that you want to read, but it hasn’t been written yet, then you must write it.”
Toni Morrison

Which book did you turn to after diagnosis? Tell us in the comments below.

5 TED Talks that speak to people with chronic pain.

Tuned in to a Ted Talk?

TED started back in 1984 as a conference where Technology, Entertainment and Design shared a sandbox. Today, TED covers the gamut—from science to business and medicine. The format is short, powerful presentations that spark inspiration and thought.

We perused some of the top TED Talks on chronic disease and whittled it down to five. Tune in and share your favorites. Get the scleroderma community talking.

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